Saturday, January 07, 2012

Happy ending to 2011, tough start to 2012

I know I'm way behind so I'll try to give you the reader's digest of the last several weeks. Overall it has been very exciting until this week...

Starting mid-November Mason had 6-7 weeks FREE of apparent sickness (no congestion at all!!) after starting his home infusions of antibody IgG for his immune system! This was a HUGE blessing, and he made some awesome cognitive strides during this time including...

*starting to use his hands on his own! (before this time he would not voluntarily touch anything besides his Mickey Mouse lovey). He'd started exploring and touching and hitting things just for fun, to play! It was great!! Here he is playing with his musical garden...

*Finding his voice!! Up til this point he hadn't "babbled" only grunted, cried, "roared", etc. One day we were trying to teach him to do the sign "more" during vision therapy and not only did he do his own version of the sign, he also started making a loud squeal that he used consistently to mean "more"! Here he does "Gingerbread Man" game with Grammy where he really took off doing "more" and then playing with his new sound activated "Jumpy Crab."

*We got a Kindle Fire for Christmas to help me have an electronic record of his health for the doctors, and for mason in physical therapy and vision therapy and overall speech (much cheaper than an iPad but just as effective for him!!) We show him cause/effect apps like "Peekaboo Barn," "Gravity Storm" (lots of lights for him to track/touch), and "Kid Paint" -
Here is his first piece of art from it (yes, a budding Picasso - he did all that totally by himself, no one directed his hands at all, by wiping his own fingers, hands, elbows or head across the screen! Every mark represents a unique movement across the screen.) He also learned how to get toy coins into a piggy bank with his head too, in a very controlled way :) Here he is watching his personalized youtube app on the kindle fire - a string of baby babbling you can see it's very motivating for tummy time--look at him lift that head high to see those talking babies!!

*He played ball with us! If we sat him in his big bumbo chair and we said "kick kick kick" he would haul back both feet and kick it to us!! He would squeal in glee over this game ... later, as I was helping him open a new talking soccer ball he got for Christmas I told him it was a ball to kick, and he started vigorously doing the "more" sign, squealing for more and kicking his feet - before it was even out of the box! He just knew that's what was coming! He also squeals for "more" if we stop doing something he's enjoying - singing a song, playing a game with him or sharing a fun toy :) Christmas itself was a huge blessing to have my mom, dad and sister in town and to have Mason and Micah healthy for that entire visit!! :D He wasn't happy at all about his gifts either ... ;)

We had a great trip to see family in KC too and we were all spoiled all over again there!
 But as we got ready for our trip to KC, Mason started to get a bit under the weather. His wet diapers started smelling strong and he was getting congested like he was getting sick with a cold. His feedings were getting worse (not that he was tolerating them well even when he was "well"). Not to mention all the "glitches" with his food (the GI nurse called in the wrong formula without DHA) and neuro called in a refill of his seizure meds but accidentally put him back on the name brand Keppra vs generic...and yes, there are differences in preservatives, etc. The slightest change in things seem to throw him for a this was a huge change for one week - double infection (UTI/URI), new formula, new meds, etc. By New Year's Day Micah got sick with a 103 fever and virus that seemed to come and go pretty quick for him although he has lingering sinus issues. But Mason went way downhill over the next week.

Yesterday he had a seizure (the first since August) and has been diagnosed w/ e. coli UTI :( The first antibiotic (Septra) didn't help and he got worse (blood in his drool/runny nose plus very weak); after the culture came back last night they realized it was a resistant strain so now he is on nitroforantoin ....  but he had another big seizure after his 4th dose of that. So something is not agreeing...either the infection isn't getting better, he's having a problem with antibiotics, his weight has dropped so much that his body is perceiving that his Keppra has increased, or he is not dealing with the change to the name brand Keppra or non DHA formula. So many factors...or all of the above. Pray we can get into a good groove because after his first seizure it took him several hours to re-find his voice. He got it back but it took awhile. Today his seizure was worse and he actually had shaking with it (usually he just gets stiff, tonic type). And he has not been himself since 4 pm. Please pray with us that the new medicine really starts helping soon and doesn't cause further harm so we can avoid the hospital (debating whether to go tonight as he is in bad shape but fearful that it could be more harmful as he is so affected by stress which is guaranteed there) and that we can get his formula and feeds back on track so he can get back to all his exciting progress ...

"Why are you so downcast, oh my soul? Why so disturbed within me? 
Put your hope in God, for I will yet praise Him, my Savior and my God." Ps. 42:11

Mason's Mix

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